2 wks post op update and QUESTIONS

jss2011
jss2011 Member Posts: 132
Hi All,
been a long few wks. Nicholas is doing well and has been home for the past wk and I am back to work at both jobs so not much time online.
So far no issues with fatigue or dumping, very little reflux. Eating is going well except for a piece of salmon that was gagged back up. Hopefully no stretch will be needed.
Saw surgeon for x-ray and follow up yesterday and he had the pathology results back.
Margins clean but live cells in tumor and 5 of 18 nodes were positive. We knew post op chemo was in the cards but I was thinking only 1 or 2 nodes. So not sure how to take this news. Better they got them out than to find on next scan.
So now chemo regimen is on my mind. Hubby had cisplatin, epirubicin and xeloda but best results were seen in the first 2 rounds and even with a higher dose the second rounds were not as successful. (the 10 wk wait for surgery didn't help either). Does anyone know of a possible better combo of chemo for post op. The surgeon mentioned that success is better on cells before tumor is formed so that should take care of anything not seen.
Even with surgery being over I still have alot of anxiety.

Julie
wife of Nicholas
dx jun 2011 T2N2M0
laprascopic THE jan 26/12

Comments

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  • JReed
    JReed Member Posts: 428
    Chemo meds
    Hi Julie:

    So glad to hear that Nicholas is having a pretty good recovery - that is great news. Don hasn't had his surgery yet (probably mid-March).

    The chemo meds Don have been given are carboplatin and taxol. He has tolerated both fairly well. We will be as anxious as you for the results of the surgery - like you we both know that cleanup chemo could well be in the cards - plan for the worst and hope for the best is all we can do at this point. But knowing that so many others have had the cleanup chemo and are doing so well is very encouraging. Don't want to do it, but we know it is doable if required (and at least, that chemo won't be mixed with radiation at the same time).

    You must have been so emotionally exhausted by the end of surgery and waiting for those results. How is working going for you? Continue to stay positive and strong - you are WARRIORS and SURVIVORS!!!

    Hugs,
    Judy
  • jss2011
    jss2011 Member Posts: 132
    unknown said:

    This comment has been removed by the Moderator

    HER2
    Hi William,
    I asked about HER2 and was told it is for stage IV only so Nicholas has not been tested. Time to ask again or maybe insist?!! Can they do this from a blood test since the tumor was not tested? I know we need the best most agressive chemo to rid anything left behind.

    Another question...how do you know if you need a dilation?

    Nicholas says its at the back of his throat right where you swallow. When he eats it "feels" like there is something there at this feeling lasts 10 mins or longer, but he is able to keep eating. Can even eat a grilled cheese sandwich. So is this swelling?? Isn't the anastomosis a bit farther down? He is just unsure what he is sensing as this is all new and I am of no help with that except to ask people who know.

    Judy, I am so glad to read that Don is having a relatively easy go of the chemo. I can tell you that the surgery/recovery is going WAY BETTER than expected, hope that helps you both! Work is a good distraction as I stress too much. I can have time off when needed and will make sure I rest some, this whole thing really is exhausting but we get through.


    Julie
  • Luvs24
    Luvs24 Member Posts: 75
    JReed said:

    Chemo meds
    Hi Julie:

    So glad to hear that Nicholas is having a pretty good recovery - that is great news. Don hasn't had his surgery yet (probably mid-March).

    The chemo meds Don have been given are carboplatin and taxol. He has tolerated both fairly well. We will be as anxious as you for the results of the surgery - like you we both know that cleanup chemo could well be in the cards - plan for the worst and hope for the best is all we can do at this point. But knowing that so many others have had the cleanup chemo and are doing so well is very encouraging. Don't want to do it, but we know it is doable if required (and at least, that chemo won't be mixed with radiation at the same time).

    You must have been so emotionally exhausted by the end of surgery and waiting for those results. How is working going for you? Continue to stay positive and strong - you are WARRIORS and SURVIVORS!!!

    Hugs,
    Judy

    "something in the throat"
    Hi Julie,

    My dad had the Ivor Lewis surgery in October 2011. We asked a lot about dilation because he would also feel like there was something in the back of his throat. I believe this is normal, and he enjoyed the grill cheese sandwiches.
    Unfortunately we learned a few weeks after he got out of surgery that there was a blockage of the pyloric valve that wouldn't let most of the food out.
    It wasn't disastrous, although he had to be on liquid diet for three weeks before they could check to make sure that is what is was. Easy fix of Botox and he was back to his new normal.
    He is doing well, only four months after the surgery, riding his harley and eating a big mac at McDonalds (every now and again).
    It helped us keep track of what he was eating, how much and when so we could see any patterns.
    This forum has given me so much information and so much support.

    Much love and prayers,
    Beth
  • jss2011
    jss2011 Member Posts: 132
    Luvs24 said:

    "something in the throat"
    Hi Julie,

    My dad had the Ivor Lewis surgery in October 2011. We asked a lot about dilation because he would also feel like there was something in the back of his throat. I believe this is normal, and he enjoyed the grill cheese sandwiches.
    Unfortunately we learned a few weeks after he got out of surgery that there was a blockage of the pyloric valve that wouldn't let most of the food out.
    It wasn't disastrous, although he had to be on liquid diet for three weeks before they could check to make sure that is what is was. Easy fix of Botox and he was back to his new normal.
    He is doing well, only four months after the surgery, riding his harley and eating a big mac at McDonalds (every now and again).
    It helped us keep track of what he was eating, how much and when so we could see any patterns.
    This forum has given me so much information and so much support.

    Much love and prayers,
    Beth

    Hi Beth
    Hi Beth, everything is so new it is difficult to know what is "normal". Thanks for the info, I passed it on to hubby.
    Never heard of a pyloric valve, glad it was an easy fix, but liquid diets sure suck!

    Julie